Liv's story - A way forward
Donation protected
Update!!!!!!
Brilliant news !! we raised enough for Olivia to get an electric wheelchair ! Thank you so much to everyone who donated.
We are still fundraising to help towards her a cortisol pump. If we can raise enough Olivia could see a specialist and her dream is to have a cortisol pump fitted. This would administer the life depending steroid medicine her body needs without having to take tablets or injections. The last couple of times Olivia has been hospitalised it is because she was too late injecting herself. A cortisol pump would automatically administer the required dose when her body needed it and would also give it to her body in the natural way of receiving the cortisol. It would not have to use her stomach and liver the way the tablets do causing even more damage and medical issues for her . Please continue to help Liv in her desperate wish to lead as normal life as she can and fight against this horrible illness. Having a cortisol pump means seeing a private specialist and having the operation privately but again would be life changing for her. Addisons is so rare cortisol pumps are not available on the NHS.
Thanks xx
https://www.change.org/p/nhs-united-kingdom-give-nhs-patients-throughout-the-uk-access-to-hydrocortisone-infusion-pumps
https://www.verywellhealth.com/addisons-disease-symptoms-cause-diagnosis-treatment-4172782
https://rarediseases.org/rare-diseases/acth-deficiency/
Hi
I am asking for some help to fund my daughter Liv to get an electric wheelchair.
Liv is 23 years old, she has always been very healthy, active and happy and a loving member of our family. In January 2019 she was struck down with illness, she rapidly deteriorated, for the next 6 months we were all extremely worried about her as we didn’t know what was wrong with her. We then heard the devastating news and in June 2019 she was diagnosed with having Addisons disease- a rare adrenal life-threatening condition. By September she was unable to walk without aids and she found moving very difficult. More bad news followed in September 2019, when following a Neurology appointment she was found to have fluid on the brain and her pituatory gland (ACTH) controlling her hormones had now gone down to 0.
In November following many adrenal crisis’s in hospital she had her worse one ever. She was hospitalised and due to the Addisons, build-up of fluid and now muscle wastage she lost all feeling down her right hand side. She came out of hospital at the beginning of December – we bought her a manual wheelchair so we could get her out the house. Olivia now fully relied on her wheelchair. The reablement team came in and had to fit bath hoists and equipment in her bedroom. They then spent ten weeks helping Olivia become more mobile and get strong enough to be able to use her crutches in the house. We have paid to have our downstairs converted into a self contained flat for her.
Olivia currently has carers to get her up in the morning, and help her with her morning routine and getting dressed.
Olivia has been battling this condition now and she is at the stage she wants to try and live a bit more of a normal life with it. The chance to go out independently, go round the shops or go for a coffee. My elderly Mum and Dad try their best for her but they find the manual wheelchair very heavy and difficult to lift in and out of the car and push her in it.
We are hoping to get an electric wheelchair for her so we can just give her a bit more quality of life. She relies on me to take her out in the wheelchair so I can push her round. If she was to have her own electric wheelchair she would be able to get out herself and gain some of her independence back. We have researched many wheelchairs, the best one for Olivia is a lightweight folding chair with a lithium battery this leads to it be very expensive. The cost of the wheelchair is £2,500 we are asking for £3,000 so we can also have special ramps to get it in and out the car and in our front door. Again, this would just allow us to fold the chair up and take her out for the day.
If you would like to read some more information on Addison’s disease or ACTH adrenal insufficiency here are the links .
https://www.verywellhealth.com/addisons-disease-symptoms-cause-diagnosis-treatment-4172782
https://rarediseases.org/rare-diseases/acth-deficiency/
Thank you for reading our story
Jen & Liv xx
Brilliant news !! we raised enough for Olivia to get an electric wheelchair ! Thank you so much to everyone who donated.
We are still fundraising to help towards her a cortisol pump. If we can raise enough Olivia could see a specialist and her dream is to have a cortisol pump fitted. This would administer the life depending steroid medicine her body needs without having to take tablets or injections. The last couple of times Olivia has been hospitalised it is because she was too late injecting herself. A cortisol pump would automatically administer the required dose when her body needed it and would also give it to her body in the natural way of receiving the cortisol. It would not have to use her stomach and liver the way the tablets do causing even more damage and medical issues for her . Please continue to help Liv in her desperate wish to lead as normal life as she can and fight against this horrible illness. Having a cortisol pump means seeing a private specialist and having the operation privately but again would be life changing for her. Addisons is so rare cortisol pumps are not available on the NHS.
Thanks xx
https://www.change.org/p/nhs-united-kingdom-give-nhs-patients-throughout-the-uk-access-to-hydrocortisone-infusion-pumps
https://www.verywellhealth.com/addisons-disease-symptoms-cause-diagnosis-treatment-4172782
https://rarediseases.org/rare-diseases/acth-deficiency/
Hi
I am asking for some help to fund my daughter Liv to get an electric wheelchair.
Liv is 23 years old, she has always been very healthy, active and happy and a loving member of our family. In January 2019 she was struck down with illness, she rapidly deteriorated, for the next 6 months we were all extremely worried about her as we didn’t know what was wrong with her. We then heard the devastating news and in June 2019 she was diagnosed with having Addisons disease- a rare adrenal life-threatening condition. By September she was unable to walk without aids and she found moving very difficult. More bad news followed in September 2019, when following a Neurology appointment she was found to have fluid on the brain and her pituatory gland (ACTH) controlling her hormones had now gone down to 0.
In November following many adrenal crisis’s in hospital she had her worse one ever. She was hospitalised and due to the Addisons, build-up of fluid and now muscle wastage she lost all feeling down her right hand side. She came out of hospital at the beginning of December – we bought her a manual wheelchair so we could get her out the house. Olivia now fully relied on her wheelchair. The reablement team came in and had to fit bath hoists and equipment in her bedroom. They then spent ten weeks helping Olivia become more mobile and get strong enough to be able to use her crutches in the house. We have paid to have our downstairs converted into a self contained flat for her.
Olivia currently has carers to get her up in the morning, and help her with her morning routine and getting dressed.
Olivia has been battling this condition now and she is at the stage she wants to try and live a bit more of a normal life with it. The chance to go out independently, go round the shops or go for a coffee. My elderly Mum and Dad try their best for her but they find the manual wheelchair very heavy and difficult to lift in and out of the car and push her in it.
We are hoping to get an electric wheelchair for her so we can just give her a bit more quality of life. She relies on me to take her out in the wheelchair so I can push her round. If she was to have her own electric wheelchair she would be able to get out herself and gain some of her independence back. We have researched many wheelchairs, the best one for Olivia is a lightweight folding chair with a lithium battery this leads to it be very expensive. The cost of the wheelchair is £2,500 we are asking for £3,000 so we can also have special ramps to get it in and out the car and in our front door. Again, this would just allow us to fold the chair up and take her out for the day.
If you would like to read some more information on Addison’s disease or ACTH adrenal insufficiency here are the links .
https://www.verywellhealth.com/addisons-disease-symptoms-cause-diagnosis-treatment-4172782
https://rarediseases.org/rare-diseases/acth-deficiency/
Thank you for reading our story
Jen & Liv xx
Organizer
Jennifer Machaj
Organizer